NEW Workshop #805 Description The workshop description has been modified to include information for parents. This workshop will review a “deck-ade” of research and practicum for lower functioning CVI students. During the past 10 years, there’s been an explosion of brain research helpful to teachers of the visually impaired working with CVI children as well as those educating the general school population. We’ll discuss how the brain works. There will be ideas for enhancing the healthy brain and encouraging the development of the visual cortex and other compromised areas of the brain. There will also be a summary of Lilli Nielsen’s and Christine Roman’s research and publications which have improved our understanding and ability to work more successfully with CVI students. NEW Workshop #805 Goals 1. Participants will understand various Nielsen, Roman, and brain theories for working with CVI students. 2. Participants will understand how to design their own appropriate lesson plans for CVI students. 3. NEW- Parent participants will be encouraged to “repurpose” handy items from their home to enhance the lives of their children. Biography The last 10 of 30+ years teaching, Connie Unsicker was TVI with majority of caseload ages 3-22 CVI students. Attended 4 Lilli Nielsen Active Learning conferences, 2 Christine Roman CVI trainings and AFB Brain Injury conference. Attended 5 Learning and the Brain conferences where scientists presented brain research results specific to education. Retired in 2008 but continually read books summarizing brain research for laymen in effort to increase knowledge regarding brain function of CVI students.

Workshop Introduction This workshop handout includes four kits to encourage using items CVIready inside our homes and out. The kits, Let’s Get Cleaned Up, Dust or Sweep First?, Recycling Helps Our Earth, and Card Winning Strategies, all use available materials in a multi-sensory way. The children’s book Our Apple Tree is modified with multi-sensory items to enhance published children’s literature. Included is Rural Walk which describes the multi-sensory items on a typical farm walk. A itemized “Shopping List” concludes the handout for easy access to ideas. The handout also includes descriptions of two published sources for assessing CVI student assessment theory and data collection, as well as four published sources for ideas and lesson planning. 1. Dr. Roman-Lansky’s CVI Range is the most comprehensive material for assessing CVI students as well as writing of goals and objectives. 2. The APH Sensory Learning Kit can be used for both assessment and lesson plans. 3. The APH Light Box and 4. Dr. Lilli Nielsen’s Active Learning have many lesson planning ideas. Who Are These CVI Children? Born fragile and premature with undeveloped organs, CVI children would die immediately without medical technology. Tubes and lines are put into their body openings and pierce their fragile skin all over. These life-giving lines bind them when they want to move. They hang on and absolutely refuse to give up, showing patience and tenacity. We can use that personality trait in helping them learn. Their families spend months trekking to the hospital, putting the rest of their lives on hold. Instead of scooping up their newborn in their arms, parents can only stroke a tiny leg here and there, let a miniature hand hold a finger. Their lifelines are barriers to love. What a happy day when they can bring their child home- finally! But, there are many return trips to the hospital. Some are planned surgeries- closing heart holes, removing eye cataracts, inserting trach tubes. However, the hell of

emergency trips and emergency life-saving surgeries also begin during this first year. No one realizes when this premature baby survives, that a life of ambulances and air lifts, emergency room visits, hours of waiting surgery outcomes, and nurses living with the family round the clock becomes the norm for this family. All through this their child is patient and tenacious. Many times the CVI child isn’t the only child in the family. The balance of trying for a normal life for the other siblings surrounded by all these medical emergencies is very difficult. The continual strain of the emergencies and setbacks, along with the constant presence of non-family members in the home, can be too much for a marriage. There should be some special award for these parents who manage to deepen their love with this challenge. It’s easy to know the emotions and opinions of CVI children. They are happy to see us. They break into full smiles of glee when they enjoy an item or activity. They produce big frowns when they are angry or sad. Many times we can change the frown with a change in an activity. We don’t have to guess about subtle cues or mixed messages. They feel especially happy and proud when they do something independently. As CVI children grow, they will find new pathways around the damaged areas of the brain, including the visual cortex. Because the brain is a very plastic organ the healthy portions of the brain can enlarge and take over the function of the non-working portions. It’s exciting to enter a classroom and see if the child’s occipital lobe is working as well as last week and why not if it isn’t. Some days all the brain parts work together and we can observe the quality of brain plasticity at work. Other times only the brain stem is at work. It is a privilege to work with these students who have endured so much, and are loved so much.

The Brain Definitions Amygdala- portion of the hippocampus of the limbic system which regulates fightor-flight

Cerebrum- frontal cortex, the conscious mind Limbic system- functions include emotion & memory. Amygdala is part of this system. Neurons- brain cells, gray matter Pheromones- secreted chemicals we cannot detect, capable of impacting the behavior of another individual of the same species. Plasticity- reorganization of neurons so they have a new or different function in the brain. Synapses- the gap connecting neurons, where memory is created & stored. Synesthesia- adding one sense to another in ways that reinforce them both or; a combination of different ways of knowing about the same thing. Vomeronasal organ- the accessory olfactory system at top of nose, detecting pheromone information about gender, reproduction, & dominance & dangerous odors. General Brain Information In the field of visually impaired children, those with cortically visually impairment are an unusual group because their entire visual system is compromised, as it weaves from the very front of the brain through to the damaged visual cortex at the very back. The visual sense makes up 70% of the entire brain, so we’ll discuss the brain’s visual system and how CVI children can find new visual pathways. The brain is a very plastic organ. It finds ways for stimuli to move through and around damaged areas as well as allowing healthy portions to enlarge and take over the function of the non-working parts. Today’s workshop will explain how to help the visual system to learn, and change, while encouraging the rest of the brain and body to develop to it’s fullest potential. You’ll understand why much patience is required. The brain is an incredible organ. You keep hearing what’s damaged and not working so today we will discuss what is working, but first a general overview of brain.

The Brain Our brains are very complex, but they are also just a simple, elegant set of electrical and chemical transmissions. The brain’s three universal activities are: 1)reacting to the surrounding environment. 2)integrating its parts, which is where our CVI children have to “wake up” the visual cortex and 3) growing neurons. Those three activities are what we call learning. Learning is the inhabitation of emotions cascading throughout brain and the formation of memory or habits. Emotions Emotions continually cascade the brain with sensations, creating chemical changes that affect the entire brain. They are produced by parts of the brain stem, including the limbic system (emotion & memory) and the amygdala (regulates fight-or-flight). When we encourage emotional responses from our students we are engaging their entire brain which is a way to arouse CVI students. One can change ones brain physiology by deliberately assuming the appearance of an emotion and using “universal” facial expressions. Think of a skunk’s odor. That facial expression of disgust is an example of a “universal” expression. Neurons and Synapses Neurons are the brain cells that interweave emotions and memory to create the mind. Synapses are the gaps connecting neurons, where the created memory is stored. Neural growth ebbs and flows throughout childhood. There are seven measurable growth spurts in brain before age 3, then another six before age 26. These growth spurts are overproduction or “exuberance” of the synapses! At birth, synapses are at full adult levels. The number of synapses rises to twice the adult level by age 1 or 2, then plateau for several years. They gradually decline in number as they “specialize” by pruning back, and at that point the brain is once again down to its adult level.

Teens During teen years a second set of measurable neural growth spurts occur, duplicating the birth to age 5 rate again, creating twice the number of synapses as adults have once again. However, this brain growth occurs in quantum leaps, not gradually. Growth occurs first in the teen’s emotion-centered limbic system and last in the cerebrum, the frontal cortex, home of the conscious mind. During this time, teens use the amygdala, not frontal cortex as adults do. Reaction to emotions is at the instinctual level. The teen body readies for reproduction with an increase in the powerful brain chemicals, testosterone and estrogen, affecting many brain functions. Boys may become more aggressive as testosterone receptors increase in the amygdala. Girls, with increased estrogen, prepare for mothering by withdrawing from parents, and wanting to be alone or together with peers. CVI Brain Our olfactory sense (Vomeronasal organs) is one of the two senses, along with vision, which permeates the brain. It is made up of two parallel parts which bypass the cerebral cortex. They link directly to two important portions of the brain, one where long-term memory is formed, and the other, a section which processes several emotions including fear, anger, and pleasure. How can we encourage learning, using these healthy, working portions of the brain? We should include all the senses and in combination. Synesthesia is the addition of one sense to another in ways that reinforce them both or is a combination of different ways of knowing about the same thing. This works well when the child is healthy but can also be used on those days when s/he isn’t feeling well to distract from symptoms, get a smile, and allow emotions to cascade throughout brain. We all yearn to be a social being. Using emotions, we give our students a chance to communicate with the world around them. It’s a wonderful way for our students to be less isolated, engage with others, be part of their community socially, and let others know they want to communicate.

Facial & head stimulation is an excellent way to arouse CVI children. They love to have their heads covered & uncovered. The majority of the body’s tactile nerves are located on the head and face. The majority of those facial tactile nerves are in the mouth area. Mouthing is the good way for many CVI children to gather complex information. They use the supersensitive mouth-nose triangle to learn textures, smells, shapes of objects. It requires enormous energy to “jump-start” the visual cortex. We measure changes in tiny seconds. Abundant patience is required of us while the visual system develops. But, remember, when working with CVI children, “use it or lose” is the rule. We’re all facilitators in this process.

ROMAN CVI RANGES The Roman CVI Range contains the best forms for assessing an individual’s specific CVI vision and, later, measuring gains in ability. In Cortical Visual Impairment: An Approach to Assessment and Intervention, Dr. Christine Roman-Lansky, begins with children who only stare at lights and describes ten levels of functional vision, in three different general phases, using ten different characteristics or visual qualities. The following list is adapted from the forms "The CVI Range: Across-CVI Characteristics Assessment Method" found on pages 188-192 of Cortical Visual Impairment: An Approach to Assessment and Intervention. Please notice the resolution of various characteristics as the Range moves from 1-2 to Range 9-10. For example, follow the descriptions of color use in each range.

CVI Range 1-2: cont’d Prolonged periods of latency in visual tasks Responds only in strictly controlled environments Objects viewed are a single color Objects viewed have movement and/or shiny or reflective properties Visually attends in near space only No blink in response to touch or visual threat No regard of the human face By permission of the publisher, from Cortical Visual Impairment: An Approach to Assessment and Intervention, by Christine Roman-Lantzy, copyright (c) 2007, AFB Press, American Foundation for the Blind. All rights reserved.

Dr. Roman’s Range 1-2 definitions and the BBF CVI Fact Sheet correlate. The APH Light Box Level I and Active Learning activities are excellent for the Range 1-2 child. Visual portion of brain very disorganized, very difficult to excite visual pathways. The CVI Range: Across-CVI Characteristics Assessment Method CVI Range 3-4: Student functions with more consistent visual response Visually fixates when the environment is controlled Less attracted to lights; can be redirected Latency slightly decreases after periods of consistent viewing May look at novel objects if they share characteristics of familiar objects Blinks in response to touch and/or visual threat, but the responses may be latent and/or inconsistent Has a “favorite” color Shows strong visual field preferences May notice moving objects at 2 to 3 feet Look and touch completed as separate events By permission of the publisher, from Cortical Visual Impairment: An Approach to Assessment and Intervention, by Christine Roman-Lantzy, copyright (c) 2007, AFB Press, American Foundation for the Blind. All rights reserved.

A student in Range 3-4 still has the characteristics described by BBF. The APH Light Box Level I and Active Learning are still appropriate. Not so interested in other colors yet, but has chosen either red or yellow as the preferred color. The CVI Range: Across-CVI Characteristics Assessment Method CVI Range 5-6: Student uses vision for functional tasks Objects viewed may have two to three colors Light is no longer a distracter Latency present only when the student is tired, stressed, or overstimulated Movement continues to be an important factor for visual attention Student tolerates low levels of background noise Blink response to touch is consistently present Blink response to visual threat is intermittently present Visual attention now extents beyond near space, up to 4 to 6 feet May regard familiar faces when voice does not compete By permission of the publisher, from Cortical Visual Impairment: An Approach to Assessment and Intervention, by Christine Roman-Lantzy, copyright (c) 2007, AFB Press, American Foundation for the Blind. All rights reserved.

In Range 5-6, some BBF characteristics still apply, i.e. movement. APH Light Box Level II can be introduced at Range 5-6. My students now use Active Learning equipment in a different way. At Range 5-6, it becomes easier for students to participate in regular classroom lessons if visuals are adapted for acuity & lessons paced for latency. Corrective lenses become more important to improve vision and provide a frame to help focus attention. Visual pathways are becoming stronger.

Range 9-10 so there are many more detailed steps than in Ranges 1-8. She devotes an entire chapter to Range 9-10, taking into account the findings of Dr. Dutton. Visual pathways established so visual dysfunctions may be permanent.

APH SENSORY LEARNING KIT (SLK) by MILLIE SMITH The Sensory Learning Kit (SLK) is to use with profoundly delayed CVI students, providing equipment and instruction for completing sequenced routines. It contains various electronic and other objects along with a thorough two volume manual of instruction, forms, practicum, and the theory behind them. SLK Routines Book, Using the Sensory Learning Kit has information on introduction of switches, sensory systems, alert levels, goals, lesson plans, a list of simplest responses, as well as Routine cautions and samples of sequences. It then continues with 100 pages of Routines information. It includes a form titled “Routine Worksheet/Lesson Plan form” helpful for planning. Guide Book and Assessment Forms for Using the Sensory Learning Kit, is a nearly 200 page guidebook and forms. It has 5 multi-paged reproducible assessment forms as well as CD templates and completed samples. The forms are:

1. Sensory Learning Summary- current status summary form of successful 6 sensory channels data collection. 2. Arousal State Profile- Helps with Assessment portion of IEP & is designed to be updated. 3. Sensory Response Record - helps with Learning Media Assessment, Present Levels, goal writing and progress report writing of IEP. 4. Appetite/Aversion List helps writing objectives and lesson plans. 5. Level and Strategy Guide also helps writing objectives and lesson plans and can also be used as an alternative assessment. DR. LILLI NIELSEN’S ACTIVE LEARNING Dr. Lilli Nielsen is a Danish psychologist who worked for over 40 years with visually impaired people who have additional disabilities- even Pre-Light Box students who have no visual response. Active Learning Theories of Dr. Lilli Nielsen “Active Learning is based on creating optimal supportive environments where learners can take action independently & LEARN ON THEIR OWN. The environment supplies strong responses in multiple modes (auditory, tactile, visual, & olfactory). The environment must be thick with objects so that minor actions are rewarded with feedback. “The challenged learner is alert & actively engaged. The learner may not appear to accomplish anything, but the time is productive.” (TSVIB website) The students learn more while no one is talking. Only after the student is finished does Dr. Nielsen suggest the observer always summarize the completed activity with the student. This gives language and meaning to the feelings the child had while exploring. Always describe the student’s favorite part where the biggest smile and the loudest utterances were observed.

Lilli Nielsen Active Learning Items designed by Unsicker 1. ACTIVE LEARNING BINDER- Three inch 3 ring binder to be used on desk in easel position or open, standing on base. Multi sensory items are attached to elastic & wire ties put through holes and on the 3 rings. 2. ACTIVE LEARNING VEST- Hand towel pinned around neck with multi sensory items attached with diaper pins ONLY (for safety) directly to towel or on elastic. 3. ACTIVE LEARNING POMPOM- Multi sensory items tied to strands of the mop head and plop on hands for students with most restricted movement, unable to move to mouth.

IDEAS FOR HOME Connie Unsicker, copyright 2005 Encourage use of vision at the appropriate level of your child. In addition, use his/her senses of smell, hearing, and touch as much as possible. CVI children enjoy repetition, more than novelty. Take advantage of our powerful sense of smell when brushing teeth, eating, etc. When on walks, notice all good and bad smells as you stroll. (VI people use smell as part of orientation, etc.)

avoid only if they immediately grimace. Notice the type of air on the face- warm, cold, soft, windy, etc. Allow the various path textures to vibrate up through the wheelchair, edging plants brush his/her face. Let him/her be in the kitchen while cooking. Let him/her touch and hear the sounds of food and preparation. Let him/her smell raw onion before it caramelizes when cooked, feel and smell raw potato vs. cooked, herbs, smoothie items before & after, etc. Help him/her turn on the blender and watch toast pop up. Name an object, and describe what he’ll see, then show it to him/her. (Think about being told the Canadian flag is a picture of 2 men arguing rather than a leaf.) Be quiet while s/he experiences it, knowing its name. Remember, your child is happy when you’re happy. Your child can’t play unless you are having fun also. So, sit back, be silent and wait very patiently while s/he explores and reacts to the environment and activities.

Multi-Sensory Rural Walk Connie Unsicker, copyright 2006 “When the walk is over, I’m going to ask you what your favorite part of the walk was.” During walk, acknowledge his feelings by verbalizing them as you see them. If your child is unable to reach out to touch, you can use a ruler as an extender by wrapping a towel around as a handle. Let the ruler bang against the fence, wall, etc., listening to the sounds as the touch vibrates down his/her arm. 1.

“It is hot/ chilly, feel the sun, breeze on your face.”

2.

“The driveway feels bumpy. Listen, we roll over crunchy oak leaves.”

3.

“Smell the dried oak leaf. Smell fresh oak leaf.”

4.

“We’re going downhill.”

5.

“We’re on quiet grass.”

6.

“Here’s the car. The handle’s hot/ brrr cold.”

7.

“Slam the door- it’s loud.”

8.

“We’re turning left to go see the chickens.” Press and push the left shoulder.

“Listen to the chickens, their soft noises/cluck loudly/ scratch dirt.”

12.

“Feel the warm egg.”

13.

“We’re backing up. It’s so rocky & bumpy! We’re going slow.”

14.

“We turn right. We’re on a soft dirt road.” Press and push the right

shoulder. 15. “We’re in the shade. Listen to the sounds- birds/ leaves in breeze.” 16. “Smell the fresh bay leaf. (Smell a dried bay leaf- it’s so different!)” 17. “We’re in & out of the sun in dappled shade.” 18. “Here’s the big yellow fire hydrant. It’s tall & cold. Is it smooth?” 19. “Here’s a metal sculpture. Look at the bright shiny top. If we tap it with a stick-it makes music. Tap it soft/hard fast/slow /with rhythm. It’s loud & deep. The silver makes a higher tone.” 20. “Let’s turn around & go home.” You can review/point out items he enjoyed when outbound. When you return to house, choose 2 things to ask which was his/her favorite part today, i.e. “Did you like the chickens or Elmo best today? Did you like the chickens best, yes or no. Did you like Elmo best, yes or no.” You can even say you noticed him grinning at the ______ today.

Mary Morse presentation- good descriptions of practical ways to work with CVI students. 2008 JTLI conference at: http://www.afb.org/Section.asp?SectionID=28&TopicID=92&DocumentID= 4134 Click on “An Overview of Some Educational Techniques to Use During High Teaching Times” and ”Environmental Consideration Checklist”

RAFT Project directions pages (Resource Area for Teachers), an organization which supplies teachers with recycled materials, workshops, & curriculum ideas-http://www.raft.net/index.php?pg=teachers Then click on “Idea Sheets”. Texas TSBVI site full or ideas for parents and teachershttp://www.tsbvi.edu/Outreach/seehear/archive/